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Bone pain from multiple myeloma may be constant for some people, while for others it flares up or comes and goes. Why is bone pain sometimes unpredictable?
For some, bone pain comes and goes early on, then becomes more constant as bone damage progresses. Others notice patterns tied to movement, time of day, or treatment.
In this article, we’ll look at why myeloma-related pain may change and when and why it’s important to report pain to your cancer care team.
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Movement and pressure are two of the most common things people connect to pain that comes and goes.
Myeloma cells can interfere with the normal process of bone repair. This can lead to weak areas called lytic lesions, osteoporosis (thinning bones), and fractures. These changes are among the most common sources of pain in multiple myeloma.
Early in the disease, bone pain may be intermittent. Over time, the pain may become more persistent as bone damage progresses. Bone pain may worsen with weight-bearing activities or movement because those activities place stress on already weakened bones.
“I have back pain and can’t walk too well some days,” one MyMyelomaTeam member shared. “It’s bad when I try to wash clothes or am bending for long periods of time, but I still get out. I just ride the carts in the stores.”
Another member notices pain after sitting in one position for a while, adding, “I have severe leg and hip pain after riding in the car for over an hour. I have to stop and walk around.”
A handful of people have noticed their pain actually improves with movement. One member exclaimed, “I found an exercise that relieves my bone pain!” They didn’t share what the exercise was.
“I have bone pain in my lumbar area from old fractures. It’s kept under control with Tylenol and by making myself move more,” shared another member.
It’s important to remember that pain may respond differently to movement depending on the person and the cause. It’s best to check with your care team before starting a new type of exercise.
Many people with chronic pain notice daily patterns, and myeloma is no exception. For some, myeloma-related bone pain may worsen during the day as activity levels increase.
Some people report the opposite pattern and notice more pain at night. Bone pain may become more noticeable at night when the body is at rest or when they change positions in bed.
“I have severe pain in my right shoulder that gets bad when I lay down at night,” added someone on MyMyelomaTeam.
A few members have found creative workarounds, with one adding, “I find if I prop my legs up, I get better. Sometimes I sleep in a recliner and put it on vibrate all night.”
These differences highlight that there’s no single “normal” pain pattern in multiple myeloma. Pain can vary considerably from person to person.
Not all pain in multiple myeloma comes directly from bone damage. Research has found that treatment-related symptoms can include leg cramps and neuropathy (numbness or tingling).
Nighttime cramps are commonly reported by people living with myeloma. Treatment effects, changes in activity, hydration, medications, or nerve-related symptoms may all play a role.
“Some nights I have to get out of bed three or four times and walk about to relieve cramp in my legs,” described a member. “Daytime is OK, usually just back pain when standing in one position without support.”
“I’ve been experiencing muscle spasms on a regular basis at night in various locations: inner thigh, hands, shoulder, jaw, arches of my feet,” added another. “It’s very uncomfortable, and I wake up several times a night with these.”
Sometimes pain comes and goes because nerves are involved. Myeloma-related bone damage can lead to compression of nearby nerves.
Neuropathic pain may feel burning, shooting, tingling, stabbing, or electric-like rather than aching. This nerve pain can also occur as a side effect of certain treatments. Unlike bone pain, nerve pain sometimes appears in short bursts or flare-ups.
“I’ve been having radiating pain from my right buttock down my leg, and my feet have been falling asleep. Since I am newly diagnosed, I’m wondering if it is a side effect of the treatment,” shared a member.
It can be tough to tell where pain comes from, but if you notice numbness, tingling, or radiating pain, tell your care team.
Many people notice changes in their pain after starting treatment.
Treating myeloma often helps reduce bone pain because it slows the disease process that damages bones. Treatments such as radiation therapy, vertebroplasty, or kyphoplasty may also provide pain relief in specific situations.
However, treatment can sometimes introduce new sources of discomfort. Treatment side effects, medical procedures, or tests may cause pain that’s often temporary and improves or disappears once treatment is completed.
Even if someone feels better overall with treatment, they still may experience temporary pain flare-ups related to treatment.
Beyond bones and nerves, a few other factors may affect how your pain feels from day to day.
For some members of MyMyelomaTeam, changes in the weather seem to go hand-in-hand with pain that flares and fades.
“Cold weather = bone pain,” one added. Another member responded, “Changes of weather drives me nuts. I am with you.”
Pain usually doesn’t happen alone. In fact, fatigue and pain often influence each other in a cycle.
Pain can interfere with sleep and daily activities, while fatigue may make the pain more difficult to cope with. As a result, some people may notice pain that feels worse after poor sleep or during periods of exhaustion.
Others may experience more discomfort when stress levels are high. These patterns don’t mean that pain is “all in your head.” Rather, pain is influenced by both physical and psychological factors, including sleep, mood, stress, and overall health.
Bone lesions, fractures, neuropathy, treatment side effects, fatigue, and many other factors can all contribute to pain in people with multiple myeloma. Because of this, even doctors can’t always determine the exact cause of every pain flare.
What you can do is keep track of what you notice. A symptom diary or journal can help.
You may want to write down when pain or other symptoms occur and what you were doing beforehand. You can also note test results, treatment side effects, or any questions you have for your healthcare provider.
A symptom diary can help you communicate with your care team efficiently and help them better understand your symptoms.
While intermittent pain can be a common part of living with multiple myeloma, new or worsening symptoms should never be ignored. Working closely with your cancer care team can help identify the cause and find strategies to keep pain under better control.
As one MyMyelomaTeam member shared, “I got through my pain by following the instructions of my doctors, keeping my scheduled appointments, and being patient with myself.”
Your oncologist may refer you to a palliative care specialist. These doctors focus on helping you feel better at any stage of cancer care, and that includes pain relief.
Always be sure to talk with your healthcare team if you start experiencing any new pain. You should seek medical attention right away if your pain is sudden or severe.
Sudden severe back pain may signal a fracture or spinal problem that needs urgent evaluation. Symptoms such as weakness, numbness, tingling, or difficulty walking should also be reported right away because they can indicate nerve or spinal cord involvement.
Spinal cord compression is a medical emergency requiring immediate medical assessment because delay can lead to permanent neurologic damage.
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